by Ron Suskind
Not that there’s much interaction at those birthday parties. But everyone has a VCR and everyone has the Disney classics. So there is a bit of exchange, a hug or “hi” (one of Owen’s new words) upon arrival; then they’ll watch Jungle Book or Snow White and the Seven Dwarfs together, side by side, until the other kids drift away. Squint a bit, and it looks a lot like friendship.
As for Walt…nothing to worry about. He’s like a junior adult at seven, able to handle anything that first grade can throw at him, and taking advantage of all Lafayette Elementary, our neighborhood public school in Northwest DC, has to offer.
Everyone crafts stories out of their experiences, a fundamental human impulse, and Cornelia and I have one for Walt.
It happened in the first month of first grade as Cornelia drove him to this new school. Daunting for any kid, right? Well, a few blocks away, Walt taps his mother on the arm and says, “Let me out—I can walk from here, mom.” Cornelia’s flummoxed. “Walt…they know you have parents. You’re not some street urchin making your way in the world.”
“I’ll be fine. I know the way.” And off he goes. Soon he starts biking the half mile or so to school, eliciting shock from a few of his classmates’ parents—seasoned by years of milk carton photos to fear the worst.
We never fear for him. It seems like every step he takes toward autonomy is a worthy feat, deserving of affirmation, especially because he doesn’t abandon his brother, something we really do fear.
Many years later, as he moved into adult life, Walt explained what was really going on. He was embarrassed by his brother. The looks, the questions, it was as though he was facing a wide world of prying eyes, too many to challenge, to face down. He told us he wanted to be dropped off because his brother was in the car. Walt knew that if Cornelia walked him in that first day, like the other moms, she’d have to bring Owen in with her. And God knows what might have happened.
In present tense, we’re blind to this. We tell friends of the first day drop-off. Turn it into narrative. That Walt. He is so independent.
There are no stares in our basement. As Owen turns five in the spring of 1996, his life is, more and more, spent in front of a screen, with Walt sometimes at his side. The Disney movies—we now had fifteen of them in our collection, and some shorts—rule the subterrain.
That’s where the big TV is in the new house. It’s a cave, dark and warm, with just a little natural light from the half windows near the ceiling. On the couch, we watch movies with Owen. Family members move in a rotation. Owen, after a heavily scheduled day of school and after-school therapies, settles down below. Corn might drop in to watch Lady and the Tramp with him. When he gets home on his bike in the late afternoon, Walt catches a viewing of The Little Mermaid. In the evenings, before Owen’s off to bed, I squeeze in a little Aladdin.
Is this healthy? “Team Owen”—what we now call Owen’s team of doctors and therapists—is uncertain. We tell them he’s reciting long passages of movie dialogue in ten- or twenty-second bursts without, it seems, any discernible recognition of what he is saying, like someone who sings “Frère Jacques” for years and never notices—or, frankly, cares—that it’s about someone named Brother John.
In school this recitation impulse is becoming a problem, something to be remedied. He’s doing it when he is supposed to be quiet or listening to instructions or, most importantly, engaging in some sort of activity with other students. The doctors and now the teachers call it “self-talk” and formally define it as “perseverative behavior”—a feature of autism and pervasive developmental disorders defined in the medical literature as the “repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by a brain injury or other organic disorder.” Looking for ways to control it and reduce it, they recommend we limit the movies to an hour a day.
We say that’s impossible. The movies run ninety minutes, and he gets very agitated if you cut it off before the end. After “juicervose” and “bootylyzwitten,” we aren’t about to turn away from the screen. Though his pronunciations are slurry, the cadence swift and arrhythmic, we are ever trolling the verbal stream for a familiar word. Or even a sound. Take “Seb.” It’s not a three-letter grouping you find much in common usage (sebaceous? seborrhea?). But it’s got two strong consonants that stand tall in the flow of enunciation. Hear it, and we know he is reciting some passage that involves Sebastian, King Triton’s crab sidekick from The Little Mermaid. And, of course, we dive in, with every reference from the movie we can summon. As we do, he looks at us, quizzically, often smiling. For a particularly good rendition of the crab—the voice actor, Samuel E. Wright, has a rich voice and uses a Caribbean accent—he might offer a “Sebastian is funny” before running off.
Toddlers engage in what’s called “parallel play,” where they play alongside another child but not with them. Developmentally, that stage tends to end between twelve and eighteen months. What’s clear, is that in many areas Owen has regressed to a place before that. He is in parallel play in only the most general way; more like proximity play. The goal—everyone’s goal—is eventually to get to the sunlight of interactive play—full of expressions, mirroring one another, quick responses that build a give and take, a kind of collaborative imaginativeness—that is such a powerful driver of growth and development in children. He was doing plenty of that in the last days in Dedham.
But you take what you can get. Side-by-side engagement is where we live each day. We draw warmth—and a sense of connection we desperately desire—from smiling with him at some parts of a Disney favorite, growing quiet at others. He definitely seems to be reacting to the movie in gesture, if not, of course, in word. There are times he laughs—like when Robin Williams, as the Genie in Aladdin, goes through lightning-fast transformations from Arnold Schwarzenegger to Jack Nicholson to William F. Buckley as he sings “Friend Like Me”—and we laugh uproariously in affirmation, even on the twentieth viewing. And then there are times when he seems to grow quiet, watching Mrs. Jumbo reach from the window of her prison car to wrap Dumbo in her trunk and rock him. Often he’ll be sitting next to Cornelia or me and we’ll pull him close.
But then we hear a phrase that troubles us: “Not happy.” He’s saying that a lot. And it’s new. We investigate and find out it’s the go-to phrase of an assistant teacher from his half days at Ivymount. Trying to control his behaviors, or redirect them, she’s tells him she’s “not happy.”
It’s Owen’s main phrase—at home, in the car, at the mall—and it doesn’t take us long to feel “not happy” with Ivymount. Owen seems slightly more able than some of the kids this year in his class, and his modest progress is enough to spur hope. By the fall of 1996, Ivymount—with the big-hearted Erics and a heavily structured “special needs” curriculum—is gone. It’s a full day with the typical kids at NCRC.
Just before Thanksgiving in 1996, a Maryland psychiatrist, who’s on a new National Institute of Mental Health committee to assess autism treatment, speaks at the school. It’s been advertised. Interested NCRC parents from DC and Maryland crowd in, many seeking the next school for their own children. Before introducing the doctor, C. T. Gordon, NCRC’s director asks Cornelia to speak about our family’s experience on behalf of the other special-needs families.
“For all of us who have a special needs child, going places can be a difficult thing,” Cornelia tells the audience. “There’s the unpredictability of what our child may do in public. Worry about the reactions of other people and their siblings. And that’s something that’s with us all the time and weighs heavily. But being at NCRC is easy. It’s a place that really cares about our kids, that’s here to help our kids, and everyone on the staff makes us feel welcome and at home, not different.”
Afterward, she and Dr. Gordon talk. He also has an autistic son, a year older than Owen, with no speech. Dr. Gordon will soon join Team Owen.
It’s a glorious night, a moment when we feel settled. But
it’s also late fall, when the parents are beginning to angle toward the big prize: entry of their young pride-and-joys into one of Washington’s storied private schools, like Sidwell Friends, where the Clintons and Gores sent their kids, or St. Albans, the private academy for future leaders. NCRC is a feeder school for both, and for Washington’s other exclusive schools. There’s much talk at the punch-and-cookie reception about who’s applying where.
How about Owen?
“He’s doing great,” Cornelia says, with a frozen smile. That’s all. They’re planning for the future. We live in the present. Hold onto it for dear life.
The next afternoon, I’m back at the school, wearing a red-and-yellow-striped stovepipe hat. As in The Cat in the Hat. It’s something I did from time to time over the past year: come around to lead the kids in some high-energy games, making it a little show.
I’d known some of them for over a year, and many of their parents. As I look across the smiling kids, I think what I think on every one of these visits: who, in this group, might break from the pack to play with Owen—curious about what was behind the distant smile and soft patter of recited dialogue. Maybe it will help that he’s the son of the clown, especially if I can draw the kids, in unison, into shared, raucous activity. Like always, I’m trying to create a circle of normal, an irresistible, swirling place—that Owen might inconspicuously slip into. Inside, maybe he’ll find a friend.
After an hour of running, juggling, and flipping kids up on my shoulder, I crawl into the foyer of our house, dripping in sweat.
“How’d it go, Mr. Clown Face?” Cornelia has made a late lunch for us.
“Great joy, had by all; Owen, too.”
“Any of the other kids engage with him?”
“No, not today.”
We’d talked late into the previous night about the reception: Corn’s speech, the nice reception, meeting a doctor with an autistic son. Now, at lunch, we talk about how all the kids are angling toward their next steps. “After this spring, I don’t imagine he’ll see many of them again,” I say. “They’ll be moving on, moving up, that’ll be that.”
This school has been a brief fantasy. Here, on any given day, he moves among typical kids, like one of them. It’s an illusion, now slamming into a brick wall of reality.
What will be his next step? At that moment we felt Ivymount wouldn’t work; it’d be a step backward. In the coming months, we look at a few schools that aren’t right for him. DC has terrible choices in the public system. There are no other options.
Save one.
“Shining city on a hill” was the Ronald Reagan phrase that so swiftly washed away the earnest, problem-solver glumness of Jimmy Carter, ushering in a new era of willed optimism, a time of experimentation in the uses of that magic word: confidence.
When there’s cultural change, often institutions arise that embody that shift, suffused with the rhythms of the period. One such institution sat resplendent, atop a crest of hill overlooking the upper Potomac: the Lab School of Washington.
Redemptive narratives are always appealing and the story of the school and its founder was a snapping good one. It starts with the brassy daughter of a New York department store magnate who found herself in the late 1960s trapped in a proper life of official Washington as the wife of a socially ambitious State Department official. All seemed intact until it became clear her child was born with special needs. Sally Smith made him the focus of her life. She was soon divorced and was tutoring her son, Gary, with a few other special needs children in her home. She had skills—having studied dance with Martha Graham as a Bennington College undergrad and received a master’s in psychology from New York University. Now she had a mission, especially after DC recommended her son be placed with kids who were either emotionally disturbed or retarded. She said he wasn’t either—that he seemed alert, even bright in a few areas, but didn’t learn the way most other kids learned.
There was no school for him. So she built one, and they came: lots of kids with no place else to go.
The school was immediately overwhelmed by demand and moved from building to building across the decade. Smith wrote extensively from her post as an American University professor about learning disabilities, especially the most common one, dyslexia, and how the learning-disabled (LD) population—already estimated at 3 percent of children—was growing fast. She attempted, in a best-selling book, to kill off the stigmas around LD, to show that LD kids would often compensate for problems with reading or language by becoming visual learners or developing artistic skills. It was a framework that, twenty years hence, would be applied to a vast and growing population of kids with autistic spectrum disorders.
But LD came first. And Smith’s big break, in 1984, was a major reason why. She’d moved into a new building, a stone castle overlooking the Potomac in desperate need of renovation. She decided to try a fund-raising gala and sat down with a parent of one of her students: the People magazine bureau chief for Washington. Through a few stories in the magazine—where actors or artists would talk about “problems in school”—and lots of phone work, the duo lured an astonishing quintet to DC to receive awards as what they called Learning Disabled Achievers.
That fall a thousand Washingtonians in gowns and tuxedos gathered on a vacant floor of the newly built Hecht’s Department Store in downtown DC—a vast room outfitted for a formal gala, with House of Representatives Speaker Thomas “Tip” O’Neill stepping to the podium as master of ceremonies. Sally Smith, though, carried the night, introducing each guest with a “This is your life” flourish. Her twist was to turn it into a brutal litany, drawn from her interviews with each guest, that went something like this: “You [fill in celebrated name] were called stupid, someone who’d never amount to anything.…You were held back in third grade because you couldn’t read.…You felt ashamed of what you’d received on a test and hid the paper.…But one teacher took you aside and said, ‘Let me help.’…” Then, none other than Cher, Tom Cruise, Bruce Jenner, and the artist Robert Rauschenberg stepped up to receive engraved crystal bowls and speak, voices cracking, of long hiding their disability. Rock Hudson had just died, after revealing he had AIDS. The ugliness of shame and secrecy was on everyone’s mind—forces to be vanquished. As the awardees spoke, the crowd, including a healthy number of congressmen and cabinet secretaries, stood and cheered themselves hoarse. The Lab School gala, plastered all across the next morning’s Washington Post style section, raised $386,000 that night.
Soon, the castle on the hill was receiving more publicity, brick by brick, than almost any school in the country. PBS did specials, and Smith’s model using the arts as a gateway to educate kids with dyslexia or ADHD soon became widely adopted. Rauschenberg came every year to the school to train and celebrate art teachers who used creativity to unleash the talents of “untraditional learners.”
More celebrities came to be honored, a glittering roster every year, and the replacement of “learning disability” with “learning difference”—a swap encouraged by advocacy groups that generally drew raised eyebrows about the hollowness of politically correct speech—soon had an affirming army of forthright LD achievers. Many parents began to see their children with new eyes. Learning difference? Seemed to make sense. A traditional learning pathway is blocked; compensatory skills develop to find another way.
The practical effect of this? More parents and developmental pediatricians were willing to embrace the LD diagnosis, which often seemed to bump up alongside a smaller but growing number of diagnoses for kids on the autism spectrum. They all shared a legal right under 1975’s Individuals with Disabilities Education Act and related legislation for publicly funded placement in the “least restrictive environment,” or, in English, a school tailored to the child’s needs.
What, in fact, were coalescing were two vast communities of special needs: LD and autistic spectrum disorders. A quarter century after that glittering night in DC, geneticists would begin to discover that a wide and growing array of disorde
rs, including OCD, bipolar disorder, and schizophrenia, may be genetic cousins to the LD or autism. All of them emanate from the same self-regulatory functions of the brain. No one is clear why the incidence seems to be rising in this family of disorders. Link them all together, like so many buoys attached to a shared anchor, and, by 2012, they affected almost 20 percent of the population.
But Sally Smith and LD were the first over the wall. After that gala in 1984, lines began forming outside the Lab School and other schools like it. And soon it seemed to stretch to the horizon.
Of the learning disabled students at the Lab School in 1997, about a quarter of the younger students had autistic-like behaviors and profiles. There is nothing we won’t do to get Owen in. Smith understood that many of the kids applying would be difficult to test, especially the spectrum kids. To be considered, she demanded something—anything—to show innate ability or aptitude.
Dr. Bill Stixrud, our testing guru, is a specialist in measuring aptitude, even when it is deeply submerged. One of the country’s leading neuro-psychological testers, his challenge isn’t simply to measure Owen’s underlying intelligence—but to discover it. Owen seems more attentive. He’ll often look at you now. He’ll sometimes smile when you do. What Alan Rosenblatt saw under the chair that day—where Owen was playful—had grown and flourished. But testing whether he has sufficient aptitude to get into Lab: where to begin? He’ll soon turn six and barely speaks. He isn’t much on following directions, either; crucial in test taking of all kinds. Tests Stixrud administered last year placed his capacities at between 1 and 3 percent for kids his age; his estimated IQ at 75, the threshold for retardation.